Always in the back of your mind
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Just my own perspective - after I had a hysterectomy for endometrial cancer in 2008, I had my first basal cell skin cancer within a month. BCCs aren't much on the cancer scale, but I was so damned offended, like nature had added insult to injury. I didn't do much in the way of follow up care for the EC, partly because it was treated as a one and done, and I didn't like the doctor so I didn't want to go back after a few exams. So about six months in, I stopped thinking about it. I did keep up with the recurring BCCs, one of which got pretty nasty and required a large Mohs surgery in 2016. Bleah.
The breast cancer and kidney cancer are different because of the aftercare. Besides the weeks of radiation, there's the years of Tamoxifen as a long-term reminder - and the crooked chesticles as I get dressed every day. The kidney doesn't show, but things do NOT feel the same inside, plus I'll get six month scans for who knows how long, and alternating doctors' appointments between the oncologist and urologist. So physically, I can't just forget about them this time. All I can hope for - at least for now - is an occasional month with no appointments or tests.
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Reading this thread has been very therapeutic! Runor you described the ghoul well. He stinks and is breathing down my neck, stares at me then looks away. I want him chained up and mercifully executed. Sorry ghoul but you need to go away forever.
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Alice, the good news is that non-melanoma skin cancer may be associated with a lower incidence of Alzheimer's.
https://www.huffpost.com/entry/skin-cancer-alzheim...
Not nearly as challenging as your history, but I had a basal cell carcinoma, followed by BC a couple of years later, then a squamous cell carcinoma last year. Losing my mental faculties is scarier to me than cancer so I hope there is merit to this idea, even if the study sample size was small.
As to moving on, my nipple has been itchy off and on the last couple of days. Of course, my brain immediately goes to, "Isn't that a symptom of Paget's?" Someone cautioned me in my early days on the forum to bear in mind that posts here tend to be skewed to the negative. For every low-risk person who tragically develops metastatic disease and posts on a Stage IV thread, there are dozens of NED people who rarely, if ever, visit BCO once their initial treatment plan is finished. That imbalance can definitely distort one's perspective. Still, I don't think the fear of recurrence ever completely disappears.
I went through a period after treatment where I rarely left the house unless it couldn't be avoided. Three years after diagnosis, I'm finally becoming more social again as well as more willing to make plans for the future. OK, Runor's new construction house idea would be waaay too much for me, cancer or no cancer, but I'm having surgery on my drooping upper eyelids next month and I'm keeping my semi-obscured eyes on TV sales. Even though the eyelids have been very uncomfortable for a few years, the procedure is not something I would have considered last year. I'm making a leap of faith (or whatever the agnostic equivalent is), but admit that I feel like I may be jinxing myself by letting optimism sneak back into my life.
Lyn
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VLH, I guess that's good news about Alzheimer's. It doesn't run in my family, and I'm counting on my niece, who's a research scientist working on Alzheimer's at a major university, to come up with something leading to a cure or preventative for those who would have it in the future.
I figure I'll get a couple more cancers in 2028 if the two every ten year schedule holds. I kind of wonder what they'll be (scary ones? inconsequential ones?) or if the aortic aneurysm I've got will have popped before then.
Sheesh, I always thought I was pretty healthy except for a few one & done temporary roadblocks.
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VLH, isn't that awful? That we can't feel positive or optimistic without feeling like we're tempting fate? Inviting the asshole in the backseat to leap up and slap his hands over our eyes leaving us veering wildly all over the road.
Many years ago I recognized in myself (and others!) something I call magic thinking. It goes like this: Flat tires only happen to people who are too stupid to worry about them. Therefore, if I WORRY about having a flat tire and pack supplies to cope with a flat tire (bottle of wine while I sit roadside waiting for aid) then it will never happen to me. I have worried and thus immunized myself against any bad luck. Take THAT you stupid people who don't worry about flat tires and then get them! Hah!
This is, of course, idiotic.
I think the reverse kind of applies to cancer and optimism. We think that feeling happy or hopeful or optimistic invites disaster. None of these things gave us cancer. None of those feelings will give us cancer again. On a rational level I know that I should feel like the world is as possible to me as it always was. On a rational level. But on a gut level, I'm afraid. On a gut level I can't buy into my own rationality.
I think we are all in shock at how thoroughly our sense of security and hope could be ripped away from us. Maybe we felt secure that we would die in extreme old age when life was boring and we bloody well didn't feel like living anymore. Then we'd just go to sleep and be done with it. That was my plan anyway. How SHOCKED I was to discover that forces greater than my own mind could so instantly derail this. Forces that happen to be my own body! I remember how shattered and destroyed and terrified and so sad, so despairing I felt when I was diagnosed. I quit functioning. I quit eating. I quit sleeping. I quit speaking. I quit smiling. I quit doing anything but thinking oh god, oh god, oh god.... The thought of being dead way before I wanted to be, all that I would miss out on, so much life with my loved ones that I still wanted to be present for - it was total annihilation. And what we fear now is that by having too much optimism we set ourselves up to have the rug yanked out from under us again. So we want to be optimistic and happy and live a well rounded life while not wanting to be set up for another sucker punch. The question is: How do you do that?
For me, the place I am trying to reach is an acceptance of my mortality. An acceptance that bad things happen. An acceptance as that we get older more and more sad things are going to happen to us and our friends and the people we love. Because that is the way of this world. That is how it has always been. That is how it was before me and how it will be after me. I am trying to accept that my job right now is to live as well as I can in the moment I am given. And to be ready to face the ugly when it arrives. I never asked the question 'why me?' when I was diagnosed because really, why not me? What's so fucking special about me that I shouldn't have cancer and some other woman should? Nothing. As I wheeled into surgery and saw all those cold, steel instruments on the table, I thought about my husband out in the waiting room. I thought about my daughter at work. I thought if I never wake up, I've had a good life. I've had plenty. Then I took a deep breath and went into the black. I fight everyday to not be afraid of going into that black again. Which is not to say it will be okay. It won't be okay. But I have to be ready to bravely stride into whatever the future holds and not be afraid. Yes, my life has gotten smaller and the scope of my vision shorter and less grand. Small things make me happy. Not being half a million dollars in debt makes my husband happy. BUt despite what I know on a rational level, and the grand proclamations of accepting fate with grace... I still have a tough time with this. I have no answers. I drive with an asshole in the backseat and I never know what he's going to do.
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For me, I thought I'd get a blood cancer.
My mother has chronic leukemia, my aunt (mother's sister) has multiple myeloma, and my aunt's twin sister died from acute leukemia. That's some pretty strong family history right there.
So I was beyond gobsmacked by the melanoma dx, and truly without words for the breast cancer. Neither of those were ever on my personal radar of things I might develop or die from.
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runor Your writing is exquisite. If you publish some of these essays sometime, please share that with us. You keep eloquently describing exactly how my brain is working, in its darkest corners.
For me, Treatment was a super long, black tunnel, where I could finally start to see light at the end, as I recovered from chemo and then final surgeries. Now I live in the light, but there's always that shadow, that back seat passenger you've identified, and I have to actively push those thoughts away. It really helps that I can occasionally vent my truths various safe places, and it also helps to read on this thread that I'm not the only one living with all this fear which has re-ordered my vision.
In my case, I didn't need a "Wake-up Call" to appreciate life. By now, at age 61, I've known quite a bit of tragedy. I've been close to people who have lived with horrible health issues and ongoing disabilities, my husband is a hospice nurse, I've lost my parents to end stages of difficult diseases, and I got cancer the first time at age 45. All of this is a double-edged sword. I'm enormously happy to be living my life and have a shot at more time, but I'm also (irrationally!) furious about living with the ongoing reality of This Beast Might Get Me. I feel a lot more vulnerable and shaky than before this DX.
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I do not fear death at all. I look forward to death immensely. It's GETTING THERE that is full of worry. I do not want to suffer and do not want to be disabled in any way.
Did end of life care for over 41 years. On a spiritual path. KNOW there are far better spheres full of beauty, love and joy waiting for us as soon as we leave the physical body.
I sure wasn't planning to die this soon. And it feels totally bizarre having one's own body turn against one. What the hell?
So glad these forums exist. Lets me know my thoughts, concerns, worries, and anxieties are perfectly normal under the horrendous circumstances.
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This tread is exactly what I need right now, I should be happy to be at the stage I am right now but I’m not. I had a large tumor IDC and clinically IBC . After BMX pathology came back pCR , I’m so happy about that, but I realize treatment is not over. But my husband who had been so supportive during surgery and the rough chemo days thinks it’s all over. I did radiation for 33 days, have infusion of herceptin/perjeta through October and an AI for 5 years. He thinks it’s all unnecessary and says he shouldn’t have to “babysit “ me anymore. I know I need to reach out to other people now
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I absolutely fo not want to suffer or be bedridden it is one of my worst fears.
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I read a talk on cancer survivorship a few years back. In regards to the saying "We all could get hit by a bus tomorrow" the difference is that those who have faced cancer have seen the bus. Seven years out, while it's not as clear, i still have not lost the image of the oncoming bus.
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I came here today after a long absence because DH brought to my attention last night that I've been depressed since I got my diagnosis (which was just over a year ago, and this November is 1 year that I've been out of treatment). This declaration surprised me, because I didn't realize it but the more I think of it, he's absolutely right. I knew there had to be a thread on here that addressed these mental issues that we face AFTER, when everyone else forgets and expects you to be a fully functioning adult again.
I detached from my emotions very well and pushed through. I never really processed what happened to me, just pushed on through treatment and all the things I could CONTROL including changing diet, exercising, giving up booze, obsessing about everything I eat, taking my pill and supplements religiously, etc. Toyamjj I feel your post so much when you talk about the guilt of eating something sugary or drinking a glass of wine. It's CONSTANTLY there and not in the back of your mind either. And evidently, I've been vocalizing a lot of this at home so poor DH has to hear me worry out loud every day about how this or that is a cancer risk (and since he's the cook in the family, he's had to come along with me on the diet thing).
I've dropped about 20 pounds since last summer, and I wasn't overweight. It's the diet change and the exercise and the poorly managed stress, which I was convinced I had a SUPERB handle on. Looking at my body now is so depressing even though I would have KILLED to fit into a size 2 in the past, I've now lost all the curves and the hourglass figure that DH loved so much. (Boob shrinkage played a huge role here too, even on the side where I didn't have surgery and I assume I can thank all the hormone changes for that).
And yet - AND YET - how can I feel OK about going back to eating sugar and red meat??? I can't cut down my exercise routine! I might get cancer again!!!
DH said last night that I have to come to the realization that the PILL caused my cancer and that it's not coming back (I was on it for 23 years). Easy for him to say. He doesn't have to live inside my head, although in a lot of ways he does because he is a sponge and I feel absolutely terrible that I've brought him down with me. He was amazing through everything but never got any support for himself (which I begged him to do) and so now here we are. Still in caregiver-patient mode and both depressed.
Runor, we just borrowed close to half a mil to buy a house and moved in a month ago. I think for DH, the fear of losing me (the breadwinner, and same as you, everything person) and getting stuck with all the bills he never wanted might cause him to have a serious health episode himself. It was my dream. But it hasn't made me any happier. I have been obsessing about getting the damn thing set up instead of working on my mental health and my relationship and how do you take care of someone else's emotional needs when you aren't in touch with your own?
The good news is, I think I found my emotions again and might be able to actually tackle this thing. One step at a time. SophiaMarie I think you hit it on the head when you said, "I really don't think of it (consciously)on a daily basis." That's the whole thing... it's always there in the back seat. Runor, I your analogy could not have been more SPOT ON.
What DH helped me realize last night is that I forgot how to be GRATEFUL. I have so many wonderful people in my life, 4 amazing cats, a great job, now a beautiful house, and yet, I can't seem to get in touch with GRATITUDE.
Thanks so much to everyone for being here and understanding this crazy effed up mind-F&$% that results from this disease. Therapy? He wants me to go but I'm not sure if it would be any more effective than this forum right here. That, and giving myself the freedom to bring WINE and BAKING back into my life (two things I gave up that made me very happy). How am I going to go about doing that without worry? Not sure yet but I will keep you all posted.
Michelle
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mwlimelite YES, this is a good place to vent and share all these very familiar anxieties, and I'm glad we have each other. I am your twin, for sure, as far as worry and guilt and anxiety and fear. I see that you're 1A, which has a SUPER GOOD cure rate, so probably you can calm down! My 2003 cancer (I was 45 years old) was 1A, and I was totally, completely, For Sure Cured. My 2018 cancer was unrelated, and a new primary. Just bad luck.
Aw, how sweet your DH sounds, reminding you of blessings to count. He sounds loving and good for your mental health! Enjoy your beautiful new home, and I hope you can go forward with hope and some joy. I bet time is your friend on this stuff. Maybe it will all be easier, and you'll feel calmer as you accrue more time since diagnosis and treatment. That's for sure how it was for me after 2003/age 45 cancer. This time, my DX is more worrisome, so I'm a bit more derailed. Alas.
I do everything on the Good Outcomes and Low Risk list, and have done so my whole adult life. I'm a tiny bit overweight but not terrible (could lose10 pounds), have been devoted to daily exercise my entire life, eat super nutritious food with no junk, and YET. Why did I get cancer twice? Probably a genetic connection, say my doctors, as there's some in previous generations in my family. Probably NOT because I'm naughty and do things to deserve it!
I've thought a lot about this, and have some ways of balancing common sense with my loud, Inner Guilt Voice. Each thing you mentioned about diet choices is loosely correlated with breast cancer, which is wholly different from blamable for breast cancer. For instance, what about the millions of women who live on red meat or drink a ton of booze or eat bazillions of simple carbs, or are morbidly obese and never exercise and eat bacon every day, but don't get breast cancer? Unfortunately, giving up all the loosely correlated things isn't a guarantee. So, we live on a tightrope, for sure.
Did The Pill cause your cancer? That seems like something to clarify with your MO. If something raises the statistical risk of something, that's definitely not the same as a cause. My MO says that for the majority of breast cancers, the highest risk factor is "being a woman and having breasts," which is to say, We Just Got Breast Cancer And They Don't Really Know Why.
I completely agree with your frustration going forward. How many indulgences should I give myself, and how will I feel about a recurrence, depending on which new rules I follow? I have those nagging worries, for sure.
I liked to have 4-6 drinks a week before 2018 breast cancer. My MO does not say zero booze going forward. More than 3 drinks a week IS correlated with recurrence/mets, so he advises no more than 3 per week, but all the way down to zero booze isn't correlated with better stats, so says my MO. So, my husband pointed out: well, if you obey the new limit, and then get a recurrence, you'll be furious that you gave a few drinks a week up for nothing! This is quite humorous, and he's right! It's our private giggle about statistical odds, which are not guarantees. I usually have 3-4 drinks a week now. Which is something I feel continually guilty about. UGH.
And, as for sugar. Yes, lots of sugar is bad. But heavens, life with zero desserts ever is No Fun! So, I have something sweet for fun about once a week--split a restaurant dessert with DH, or maybe bake something great (fresh cherry clafoutis last week, because my sister is a cherry farmer, and the cherries were divine!). I certainly had a few bites a few times of that crepe-like desserty thing.
In general, I do not eat white flour or any simple carb sugar at all, and I eat super healthy, nutritious food. Except for occasional treats, which are Quality of Life Fun Units. So, a bite of dessert once in awhile, a martini or a glass of wine once or twice a week, and the rest of the time, I'm super No Simple Carbs in my eating. Red meat? My MO says that it's not on a list of things to skip. For good sense for heart and low-ish-fat diet (which is correlated with lowered risk of recurrence), red meat as an occasional thing but not daily is fine, he says. And, what about becoming a vegan or vegetarian? I'm an omnivore. My MO says that there is zero scientific evidence that a vegan or vegetarian diet protects against breast cancer, and the same goes for organic produce. Of course, there is a slightly lower risk of colorectal cancers for vegetarians. Cured meats are on the Probably Not A Good Idea list. Research correlates a high risk of recurrence of breast cancer with DAILY eating of such things (ham, smoked salmon, bacon, etc.), but there's no clear evidence about how much is okay. So, I have those on my Occasional Treats list.
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HikingLady, THANK YOU SO MUCH for putting everything into perspective and for sharing the indulgences you allow yourself. You're right - there are millions of women who are extremely unhealthy and never have to deal with this. I need to remember that. Yes, It's just bad luck and yes, I have soooo much to be grateful for starting with my amazing DH. And the Rational, Educated part of my brain tells me it's not going to come back (my Onco was 11). But fear is anything but rational and unless you have BRCA (which I don't), the doctors can't tell you WHY you are among the unlucky ones. Of course they won't attribute it to the pill (I've asked). As you say, they can't/won't tell you anything one way or the other, just "eat the rainbow" and exercise 30 minutes a day and eat a plant based diet. Oh how different this would all be for us if there could be a Magical Genie that could come down and tell us "this is why you got breast cancer so stop doing this one thing!" Haha. Wouldn't that be something.
To be clear, I never went vegetarian. DH is a butcher - oh the irony - so there's no way I could do that. We just stick with organic/hormone free chicken and pork mostly. Occasionally, we will have red meat but I always feel so guilty - or whatever, is it really guilt? - about it. UGH. Italian subs used to be my absolute favorite, along with all kinds of charcuterie (I was a huge foodie before) and I do try to limit those to very Special Occasions. Yes, nobody should ever have to live without dessert and I also have Occasional Treats. Last night, I ate an entire cookie!! I've been sneaking in more of things from the "risk" list lately as I've found I'm still losing weight and have got to stop before I get another set of health issues from that. Certain "cheat" days in the week would certainly not be the worst thing in the world and I tend to relax a little on the weekends. More so lately, as I can see how much the restrictions I put upon my diet really affect his mental well-being because he loves to feed me.
I'm grateful that the wakeup call made me get healthier, but I definitely went overboard because I am a CONTROL FREAK and cancer gave me and my control issues the double middle finger. I know that time will help.
Thank you for sharing how you found your balance and reminding me (us) that "loosely correlated" is not equal to "blameable." I will keep this in mind!!!
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Mwlimelite, I see you're in that place of trying to be good. Do the right thing. Walk the straight and narrow. Not step out of line. This will make you small. This will make you compliant and obedient. This will not bring you to the attention of The Cancer God. He smote you once with his cancer wand and if you only do all the right rituals and sacrifices, he will pass you over and let you live out your life, unmolested by cancer. You need to follow the rules, not stray from the guidelines, you must get it right and never complain and this will keep you safe.
(long silent pause as crickets sing in the background)
No. It will not keep you safe. You are not safe. You never were. You never will be. Your chances of death BEFORE cancer were 100%. Your chances of death after cancer are still that same 100%. Everything has changed yet nothing has changed.
You are not yet a year out of treatment. That is really, really new. You do not have your feet back under you yet. It's too soon. I know you want that burden and gnawing fear to go away. It probably will, slowly, over time. But not yet. You have to hang in there a bit longer.
I do not yet have my life back and realize I never will. But before I was living on auto pilot, unaware that I was going to die. Oh, I knew it, but I never really KNEW it, if you know what I mean. KNOWING that you are mortal, breakable, prone to the vagaries of life...knowing it in your gut is the curse of humanity. As far as I know no other living creature contemplates their own end. But humans do. And it fucks us up. Your human brain is searching for the reason (the pill!, bacon!) for your cancer, as if that is the raft that you can hang onto and it will float you into shore, showing you the path you have to take to never get cancer again.
No. Won't work.
I think (and I am by no means the poster child for this because I struggle all the time with everything you are struggling with, the asshole in the backseat!) that gratitude, while something I wholeheartedly promote, has to be balanced with something else. It must be balanced (in my view) with humble Presence. It looks like this: Gratitude means you see a bacon sandwich and you think, I am grateful that I live in a world where there is bacon. But presence means YOU EAT THE DAMN SANDWICH! Presence is to partake of the things for which you are grateful. Some of the biggest pleasures in life are...the pleasures. And what have you got to be grateful for if you're not allowed to indulge in them and enjoy them? Gratitude for food you can't eat or sunshine you avoid or pain pills you don't take because you think they are bad... are you trying to be grateful for depriving yourself of the abundance? That's just crazy making. Self flagellation. It's pointless parsimony. If you FEEL better never eating bacon, then don't eat it. But if you only think it's buying you longer cancer free life, ah, eat the damn sandwich.
I am not one of these people who claim that I am a better person because I got cancer. Bullshit. I could have happily lived my whole life without that shitstorm landing in my lap. It robbed me of well over a year and hurled me into a slack faced, sloth-like moving world of gut clenching misery and terror where nothing looked good, felt good, made me smile, made me warm or made me anything. It was a hell of mute, agonizing terror and nothingness. The clouds lifted slowly and now, when a bacon sandwich with juicy tomatoes warm from my garden comes across my plate, I eat the damn thing and feel GRATEFUL that I am here to do it! I partake of the succulent and amazing riches this world has to offer because I can, at any time, be served a plate full of agony and illness. So when the good stuff comes along, TAKE IT! Without guilt, without worry, without overthinking. Reach for it with gratitude and joy and a good husband to share it with in a nice house and say, we are lucky to be here, right now, with each other, eating bacon. Life is scary, uncontrollable and bad things happen to good people. Feel your gratitude but round it off with a willing Presence and allow yourself moments of joy. You deserve them. They are free. Time will make it better. Hugs.
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Runor - I am speechless
Your ability to put into humorous prose exactly how we all feel
God love you
mwlimelite - I am your control freak sister and am working on letting loose the reins a bit.
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Oh Runor, you are so good at putting this all into perspective. EAT THE DAMN SANDWICH! This will be my mantra and will remind me about Gratitude and Presence.
You are so right, we have to enjoy the good things in life while we can.
Glad to hear it will get better with time. Boy this really blindsided me though. I really thought I had it together and had moved on. Scary.
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runor I love how you completely sum it all up; beautiful. Your words are a gift!
I have now had breast cancer twice. I didn't need the first wake-up call. I'd already watched people close to me die too young, become paralyzed, and on and on, so that whole "now you appreciate each day more" thing never sat very comfortably. The real truth is that S--t Happens, and cancer happened to all of us, and we just have to get up every day and move forward. Fortunately, I have some good bacon and tomato sandwiches every day: nature and humans I love, and a ton of music in my life (it's my hobby).
Here's another one of my tools: the under-appreciated Silent Scream. Useful.
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The most recent posts have caused several <perhaps random and unconnected> thoughts to bubble up. In no particular order. . .
--Read this. Feel free to skip down to Box 2: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5318212/
--One of my kids tore his ACL and since he wasn't yet established in his new location, we moved him home for surgery and rehab. He wanted to do the PT at a place associated with a gym, so I arranged that. At his first session, we walked over to the gym part and signed him up. I decided to join with him. That was October of 2013. Since then, I've been a regular at the gym, starting with a little yoga a few times a week, increasing slowly to where I now go for 1.5 hours, six days a week, with a combination of weights, cardio, and yoga. It's important to note that I'd spent the 20 years prior to joining the gym on my fanny. I was *never* an athlete, and did nothing physical other than running around after my kids. And it's probably also important to note that I don't particularly enjoy it. Don't really get friends who "love going to the gym." Not sure I really believe them. But when I think about it, I allow myself to be a little proud of what I've done/am doing. And since my more recent dx, I feel like it's something I *have* to do. Whatever the motivation, I believe I will stick with this for life. I believe I'll have a better old age than my mother--still alive and alert at 91, had her own bout of BC, but is not particularly mobile.
--Summer of 2016 I was having a post-tx follow-up with my RO. When I'm with any kind of MD that I like (love my RO!), and particularly since I wasn't going to see her for a while, I was asking her general health questions about what she does re: diet, supplements, . . . . She's the person I first heard about intermittent fasting from. She was doing it for several reasons unrelated to weight loss. I started skipping breakfast then, and have stuck with it since.
--As I've gotten older, I have *slowly* improved my overall diet. I was raised on tuna casserole with potato chips, Coke, and Twinkies. The only vegetable I remember from my youth was broccoli with cheese sauce from the Jolly Green Giant. Fast forward to 2019. I no longer keep bread in the house. I have cut way back on sugar. I am working on veggies. Most recent development--I've always been afraid of beans, but just in the last week I've made vegetarian chili, lentil curry, and turmeric chickpea stew. I'm a little stunned I haven't suffered any negative GI impacts.
--Most of my life I was a *very* regular drinker. 2-3 glasses of wine every night. It was habit, it was pleasurable, it triggered endorphins in my brain. My big family (sibs, parents) would *never* get together without starting with champagne and moving on from there. That pattern has continued with my adult kids, and it makes me really happy. BUT I needed to lose some weight. I've never been huge, but saw a slow-but-steady gain as I aged. I knew I would not stick to trying to quit alcohol, so the rule I set for myself was I would only drink if we were out, or if we were entertaining. I've found it surprisingly easy to stick to that. I believe one thing that helps is I always know when the next drinking night will be. E.g., I have not drunk this week but know I'm going out tonight and will drink as much as I want. I've been able to look forward to that. After this week I'm going to Disney World for a few days beginning September 8th. I will drink there. Et cetera. . .
--Vacations are vacations!! I have toast with lots of butter and honey every morning. I drink every day. I eat what I want.
--2017 was going to be a big year. One of my kids was getting married. We were invited to a wedding in Iceland. I was going to turn 60. My husband and I labeled it "The Year of Yes"--we were going to say yes to everything. It really was a *fabulous* year. This past spring, I got the opportunity to attend a Women's Cancer Survivor Fly Fishing weekend. I was very up-and-down about it--thought it might be a wonderful, memorable weekend, or I might kind of hate it given that it was going to be three days in close quarters (including sharing cabins) with complete strangers. I really could not decide whether or not to go. It was my DIL who said, "Every year after 60 should be a year of yes." Think about that.
--My husband's stepfather recently had a heart attack on his 70th birthday. He'd had a quadruple bypass several years earlier, and continued to eat/drink the way he always had. He died four days later.
I guess my bottom line is I'm probably in better shape now than I have been since I was a kid. I am eating better than I ever have. I feel zero guilt when I treat myself. Life is short.
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Ingerp THANK YOU so much for posting that nih article!!! So clearly stated, summarizing research and valid conclusions. It's exactly the information that my MO has shared with me. Many good things to keep in mind.
Saying YES, I love that!
Congratulations on acquiring the exercise habit, after many years of not. Good job!
I have the same plan that you do for alcohol---special occasions, vacations, dining out, etc. and otherwise I just don't. That makes it occasional enough that I enjoy it but don't completely deprive myself of Fun Units.
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HikingLady: <fist bump>
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Runor, if you write a book I'll be buying it. You really should consider doing this.
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Ditto what teaka123 says.
Ingerp thank you for the wonderful article. I am working on getting the exercise up.
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Thanks for reviving this thread. How do you cope with fear of recurrence? I have constant fear of recurrence at this point, still within active treatment. I have TNBC. Overall recurrence rates for TNBC are estimated at 40%. I have a 73% probability of living 15 more years, according to the Predict tool. https://breast.predict.nhs.uk/tool (Oncotype doesn't work for ER- folks, so no Oncotype score for me.) While it's "just stats," this all seems very bleak.
I always figured I'd die from stroke, based on my personal medical history. I always have rather hoped I'd die from stroke, in a quick assault, without lingering and disability. What a way to go, huh? The idea is so much more appealing than bc mets, with the potential for months or years of ever-increasing problems and pain. A dear friend has just signed up for hospice for her terminal, metastatic colon cancer. I had the privilege of visiting her yesterday. If anyone can die gracefully, she can. As for me? I doubt I'll be so graceful if mets is my fate.
My mom died at age 65. My dad died, a short 6 weeks after Mom, at age 66. Say that to any new doctor and they'll give you the side eye. I thought I would long outlive them, and here I am, 58, and I'm not so sure. Even so, my health has been excellent, or so I thought. Eating a healthy diet, exercising regularly, right weight, sleeping well, low stress, morning person, blah blah blah. All the risk factors were in my favor and still this. Really plays mind tricks.
So right now for me, dealing with my fear of recurrence means assuming I'll have a recurrence. I'm not done with active treatment, still working on rads. For each thing I've marked off along the way, I've mentally added, "for this time."
If I'll have a recurrence, then what? I need to do ALL THE THINGS while I can. I need to have all the experiences that will make my life richer: more time with family, more live music, more outdoor time, more travel, more great food... And I need to make life as easy as possible for my husband, so if I die too soon, he doesn't need to deal with too much. That includes getting our house ready to sell: clearing out unneeded stuff, upgrading appliances, getting repainting done, landscaping done, etc... Also making sure paperwork is up to date, cleaning up the financial stuff, etc. Can't leave him with the decisions he doesn't want to make anyway.
So what that sums up to is a sense of urgency I haven't had before. I've pushed a little on the appliances issue -- they'd be needed to sell the house, but in the meantime, can't I enjoy them, too? He resistant to pushing, and I don't want to make it fully clear why it's important to me.
In a way, it's the same thing as declaring a year of YES. Yes, say YES. BUT ALSO, let me say NO when it's something I don't actually want to do. I don't want to volunteer another year of service for that organization. I don't want to be in that small social group anymore. I don't want to quilt this donation project when I can't even get my own projects done. I get to decide my own priorities, not live by someone else's.
Enough rambling through this. Thanks for the opportunity to share my thoughts on this.
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One day, during active treatment, I had to see my breast surgeon (several weeks after my BMX) for her to install a Portacath for my chemotherapy. She is, herself, a breast cancer survivor, age 37 now, and had her bc at age 32. She greeted me warmly, and asked "How are you doing?" I'm sure I gave everything away on my face, as I am not a poker player. Probably shock and horror and terror, etc, through a wan smile. I squeaked out, "Okay!" with kind of an attempt at happiness in tone and face. She said, "Oh, yes, that's the Party Line!" She lived through it. Pretending you're okay.
When people ask "How are you doing?" my REAL answer would be about 10 paragraphs, describing terror and anxiety and worry (like MountainMia describes above--which unfinished business will I have left to others if I go too soon), and anger (will I meet my grandchildren, planned for, says my daughter, in the next few years?), am I to lose agency and control and comfort with mets, will my Quality of Life be worth treatment, etc. I have a complete tornado of these thoughts all the time. Tamping them down and covering them up to say "I'm doing well!" to people who love me is very exhausting. Of course, my DH knows my true fears, as do very close people in my life, like my sisters and dearest friends. But, in general, it's not kind to others to share all of my What If burdens.
I have a friend who just had her foot amputated last week. Another friend died of a progressive neurological damage disease after being a mute quadriplegic for 24 years (a type of malignant MS that's quite rare and struck her at age 25). I have a friend whose DIL has Huntington's Disease, and the family is losing her, bit by bit to that unspeakably horrible fate. I have a friend who lost everyone in her life at an early age, and she goes forward damaged by trauma that has shaped her whole self.
All I mean to say by sharing this litany, which we all have versions of, is that when I'm completely honest with myself, of course I don't feel particularly owed good health and a long life. The crapshoot that is disease just shows up sometimes. My husband is a hospice nurse. He sees the "unfairness," the loss, the fragility of life every day. It makes him treasure what really matters, and that's a good thing for me to hold onto as a goal/good idea.
I had my plans. Die really old, in full possession of my faculties, never be a burden, be that Old Lady who's really healthy! Ha ha, ha, says The Universe. Maybe, maybe not!
"I'm no longer in danger of dying young." Said a few years ago in an interview by Robert Orth, American operatic baritone, recently deceased at too young an age. Same for me, since I'm now 62, but I really wanted to die being fairly ancient.
A little bit of gallows humor gets me through it. Thank heavens, my husband is compassionate, but also hilarious, and also sincerely empathetic about my s---storm of anxieties.
I try really hard to savor each good thing as it comes along. I have goals, I take joy in a lot of things, and I DO FEEL GRATEFUL that I'm alive, for heaven's sake. I think I'm in some of the Stages of Grief. Loss of my previously-more-stable footing. Missing a little bit of that more carefree feeling about the future that I used to have.
How grateful I am that this thread is a place for this candor and supportive sharing.
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I am reading this and nodding my head, yes, I know, I get it, been there, done that, still there, still doing that.
When people ask me, "How are you?", like HikingLady said, I don't want to barf out my personal mental gymnastics that I go through to beat back the terror and debilitating grief and fear. No one wants to hear that. They just want to hear that I'm fine. That is the polite social contract, they ask a question, often only with the most surface concern, and I give a surface answer that requires little in the way of thinking or reacting on their part.
HOWEVER!.... I do tend to be a little resentful that I can't be outright honest. Yes, I can't bare my soul to everyone. But should I also say I'm fine when maybe I'm not? So the two answers I give now are 1) "I'm fine...as far as I know at this point." Because that is, for most of us, the god's honest truth. AT THIS MOMENT it seems that the disease has been carved out, poisoned out, nuked out and hormonally suppressed so until we hear otherwise we are, as far as we know, fine. Subject to change without notice.
2) "I'm doing." The HOW has to be put on the back burner sometimes, because it's just a big, sloppy mess. You might be depressed, not brushing your teeth or shaving your legs. Nothing is funny and you don't give a shit about how bad your hair looks. There is laundry that needs folding and the lawn needs mowing and you can't give a rat's ass about any of it because the thought that you might not get to grow old with your Hub and kids is sucking every shred of joy and energy out of your soul. But here you are, DOING what you're doing. Staggering, ugly and stinky through the grocery store, gnawing a stale licorice stick that you opened as you wander through the canned goods. Who cares HOW you're doing? You're DOING and that, for now, is fucking good enough! You might not win any style points but good on you for showing up to play the game anyway. That takes real balls. DOING when the how is miserable and scary. So to the question how are you doing I often just say, I'm doing, and then I nod wisely.
Mountain Mia, I also freaked out about getting my life in order and in fact, I did. I unburdened myself of a lot of possessions I did not need to own or keep. Things that would one day be keepsakes, I made them someone's keepsakes NOW. Rather than someone knowing I thought of them in death I decided to let them know I thought of them in life and I distributed items that I wanted to go to people (providing they were not in use by me, all those large, jangly earrings I am fond of, no way is anyone getting those until they pry them out of my cold, dead hands!) I got really honest over crafts that I would pursue (quilting yes, a lifelong hobby) knitting and soap making no (get rid of all that stuff I was never going to knit or play with lye). I feel liberated, like I finally got over a case of cosmic constipation. I let go of stuff I realized I was never going to do. I have more space. I have more mental clarity. I feel settled that cleaning up after me if I pop off will be less overwhelming. I adulted.
To both Hiking Lady and Mountain Mia, you are both still very new to diagnosis and treatment. It takes time for the screaming sadness and fear to fade a bit. Never completely. But with more time, it will settle to a background noise that you will learn to ignore for brief moments. Be patient and kind with yourselves. It takes time. Big breath in.
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runor Thank you again, for putting things so well! You REALLY should write a book, and your voice would be a new truth-telling one out there!
No, I'm not new to DX and TX of breast cancer. #1 was 2003 and #2, brand new primary, was 2018. I agree, the terror fades with time; it surely did for me with 2003 cancer, but that one was less scary than my new one which was Grade 3.... My 2003 cancer WAS CURED, so that's a cheering fact which slightly helps to offset some of the whole I GOT CANCER TWICE thing.
When I was being screened over the phone for my recent colonoscopy (yes, at my age, the intrusive medical fun never ends!), the medical assistant followed up my 'I had cancer diagnosed and treated in 2018' information with a peppy, "Oh, so now you're in remission?" I made sure to explain that we go forward after breast cancer treatment hoping and expecting that we're cured. If we're not Cured, there's a Recurrence, which probably means Metastasis. I suggested that she ask cancer patients whether they're in treatment, or what treatment is ongoing, but to perhaps skip that Remission question....
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Hiking Lady, I did read that you were diagnosed in 2003 and then again in 2018. I meant the 2018 diagnosis is still new and raw and a serious pisser having had cancer already you should, in my mind, get a free pass for the rest of your life! Who on earth is in charge of global justice? THey're doing a shitty job! I can't imagine struggling through this twice. In fact, I fear it.
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Thanks again, runor! Exactly! The universe did not get the memo that Once Is More Than Enough. Yes, exactly, I DID expect a free pass! Thought I had paid the cancer anxiety tax already! You're absolutely right. Whoever's in charge of global justice is clearly not handling the responsibility. Very unhelpfully, when I've chatted about this with my MO, he says that I'm ALREADY doing all the things (correct dietary choices, exercise, weight) that I can to protect against cancer. NEVERTHELESS! Harrumph.
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runor Are you my twin?! - lol
"find a new normal (that phrase makes me barf)" - I agree. I can't stand to hear that. It's just dumb.
"But now when I DO think about it, which is still every day, it's worse" I am 13 years out and I still think of this BS every day. Cancer is the gift that keeps on giving whenever I feel a pain, a twitch, a tug, an itch, a headache, a backache, a toe pain.......on and on. I have an itch in my spine - it must be cancer.
''Knowing you are going to die makes you live a different way. Not always a more comfortable way or more pure way. Getting cancer did not turn me into a saint. It just scared the shit out of me and has left me with a deep, deep grief that I can't shake. Oh, I live my life. But I have sorrow in a way that I never did. Because life is short. And people die. And it's stupid. Death is stupid." I became different in that things that used to piss me off really don't anymore; however, stupid little things and stupid, incompetent people dig deep under my skin. I think I am still pissed off about the whole cancer thing and being rushed by the drs, etc. I didn't have time to make good decisions. And I deal with the ramifications from that every single effing day. Yes, people die (every day) and I resigned myself to reality and knowing that whenever I die it's time to go. Simple as that. I'm in if death comes to my door. I'm good with it. I would rather have death than go through chemo again.
To everyone - Keep on keepin' on.
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